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Next Gen Meds in SJIA 2016
Home > SJIA Foundation Events > Next Gen Meds in SJIA 2016

Next Gen Meds in SJIA 2016

Next Gen Meds in MAS, SJIA, NLRC4 mutation and related diseases

When:
Friday 21st of October: 6 PM
to
Sunday 23rd of October: 3 PM
Where:
Mandarin Oriental,
Washington DC.

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Focus

SJIA, MAS, Still’s Disease, NLRC4 mutation, MAS+ILD and related diseases. Goal is to identify next gen drug options for patients who are not controlled by current drugs.

Participants types:

  • Prominent Scientists focused on diseases listed above
  • Small group of parents of kids with diseases listed above
  • Scientists or representatives from drug companies
  • Regulators from USA and Europe

Conference Schedule & Reception

Day 0
 Oct 21th, Friday
Informal get together in the evening
Keynote talk: Eric Hoffman
Day 1
 Oct 22nd, Saturday 8.30 am to 5.30 pm
Patients panel: to understand patient perspective & need for next gen therapies

  • Talk by FDA: Clinical trials process in USA (with a focus on rare diseases in pediatrics)
  • Talk by EMA: Clinical Trial process in Europe (with a focus on rare diseases in pediatrics)
  • Talks on potential next gen drugs and therapies
  • IL-18 Binding Protein – Tadekinig Alpha
  • IL-17 Blocker – Secukinumab
  • IL1 Blockers – Anakinra updates
  • Interferon γ Blocker: NI-0501
  • Interferon α Blockers: Anifrolumab, Rontalizumab
  • Jak Inhibitors: Tofacitnib, Baricitnib
  • Jak Inhibitors: Ruxolitnib
  • Panel: Discussion of drugs presented in previous session
Day 2
 Oct 23rd, Sunday: 8.30 am to 3.00 pm
Breakfast session with patients: Focus group & Round Tables by investigators

  • Stem Cell Transplantation
  • Allogeneic Stem Cell Transplantation: Speakers from centers with recent experiences
  • Autologous Stem Cell Transplantation: Speaker from centers with recent experiences
  • Mesenchymal Stem Cell therapy: planned clinical trials in SJIA
  • Clinical Trials Round Table
  • Conference Wrap-up

Video & Presentation

SpeakerPresentation TitleVideo LinkPresentation Link
Dr. Hermine BrunnerWhat is SJIA and how is it different than other diseases?Video
Presentation
Dr. Esi MorganLeading Quality Improvements in Pediatric Rheumatology CareN/APresentation
Dr. Daniel LovellCurrent Clinical Trials in SJIA & MASVideoPresentation
Dr. Grant SchulertResearch Updates in SJIA & MASVideoPresentation
Dr. Alexei GromMacrophage Activation Syndrome in SJIAVideoPresentation
Dr. Jennifer HugginsTreating new and refractory SJIA patientsVideoPresentation
Parent PanelParents Panel Issues & Concerns of SJIA parentsVideoN/A
Doctor PanelSJIA Experts Answer Parent's QuestionsVideoN/A

Conference Organizers

Organized by the Systemic JIA Foundation, a privately funded foundation based in California. The foundation organizes conferences, conducts surveys, makes seed grants, working with researchers and parents to accelerate the search for a cure. This conference is inspired by drug-discovery conferences organized by other rare disease foundations which have successfully accelerated development of new therapies by bringing together patients, researchers, pharma and regulators.

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Systemic JIA Foundation

4 weeks ago

Systemic JIA Foundation
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Systemic JIA Foundation

4 weeks ago

Systemic JIA Foundation
Today is #RareDiseaseDay - how are we at Cassie + Friends creating a space for our community (you) to learn, raise awareness and add your voice to the conversation? We'll be marking it with our RareTalks: Genetics and Childhood Rheumatic Disease session! An opportunity for everyone in our community - families navigating #JA, #TRAPS, #Lupus, #FeverSyndromes, #JDM, #DADA2, #Undiagnosed, #CRMO, #Vasculitis, #SJIA and all other childhood rheumatic diseases - to come together to learn about the role of genetics, ask questions, and connect with other families in our breakout room chats. This is the biggest and first virtual and national gathering of autoimmune autoinflammatory and undifferentiated/undiagnosed families from right across Canada.Not just today, but every day, we work with our community of healthcare, parents/caregivers, youth and patients, community partners and beyond to grow this community, get even more people involved in our mission, and raise awareness for further support, education, research and connection opportunities with the hopes that one day, we'll be meeting you all in person to mark #RareDiseaseDay together. Until then, we hope to see you all online tonight. If you haven't registered yet, it's not too late! Head over to cassieandfriends.ca/event/raretalks-genetics/ to RSVP.----#RareDiseaseDay #rarediseaseday2023 #juvenilearthritis #lupus #autoinflammatorydisease Autoinflammatory Alliance Canadian Arthritis Patient Alliance Arthritis Society Canada Jarproject Arthritis Broadcast Network The Flying Lifeguards Arthritis Research Canada Canadian Pain Society CRMO Foundation Systemic JIA Foundation Arthritis Foundation ✌ ... See MoreSee Less

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Systemic JIA Foundation

1 month ago

Systemic JIA Foundation
For Rare Disease Day this year, the SJIA Foundation is organizing a social hour. Bring a cup of tea / coffee (or your favorite beverage) and join us! On Saturday, 25th Feb, at 10am EST | 3pm UTCPlease register here: tinyurl.com/sjia-aosd ... See MoreSee Less

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Location 3584 Outlook Avenue, Cincinnati OH, 45208

Email Address info@systemicjia.org

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Disclaimer

This website is provided for educational and informational purposes only. Systemic JIA Foundation is not engaged in rendering medical advice or professional services and this information should not be used for diagnosing or treating a health problem. The site authors and the content providers make no representation or warranties, expressed or implied. Providing links to other websites does not imply that Systemic JIA Foundation endorses the information or services provided on those websites. The organizations operating those websites are solely responsible for the content found on their websites.